Hi im new here and have recently had a diagnosis of Hughes syndrome and sjogren's syndrome.

I actually thought I had lupus as I have many signs of it and have had 2 positive blood tests for it although I haven't actually had a diagnosis for that which im a little confused about, does anyone else have symptoms of lupus with the Hughes (aps)

Thanks for your reply in advance ;)

Caroline x

13 Replies

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  • Hello White and welcome to our forum.

    You have a diagnosis, which has the most difficult thing to get for many of our members.

    I'm glad that you have seen Prof Hughes too, I have seen him several times.

    Where are you from in the UK? I am asking in case you are in the West Country, as we have an APS West group meeting on Wednesday in Bath.

    Best wishes.

    Dave x

  • Hello Dave, Was hoping to cross the bridge and join you all tomorrow but having hospital test. It would have been my first group meeting but will look to join you all next time. My husband works in Bath which makes it easier fro me.

  • Hi Loiuse.

    I look forward to seeing you at a future meeting.

    Dave xx

  • Hi Dave, thanks for replying. I'm from Lancashire wonder if there's any meetings around here? Prof Hughes was fantastic and i'm really glad I went to see him. If you don't mind me asking have you been diagnosed yet?

    Caroline x

  • I was diagnosed in 2002 by a neurologist in Bath and then sent to a haematologist who sent me to Prof.

    Kate at the the HSF may know of groups in your area.

    Dave xx

  • Great I'll ask thanks x

  • Hello Caroline,

    I was also diagnosed with Hughes and Sjogrens by Prof Hughes this year. Also have under-active Thyroid. I too thought I might have Lupus especially as I was not aware of Hughes until my visit to London. Now on Plaquenil and Aspirin and feeling the benefits. So many symptoms can relate to more than one auto immune disease I must admit I do find it confusing. I have the rash in sunlight which is part of my Sjogrens and struggle in hot weather. Now take Vitamin D as low levels in blood. Hope you start to feel better soon.

  • Hi Louise-a,

    Thanks for your reply, I too have thyroid problems do you mind me asking how yours affects you? Also im only taking heparin to thin my blood, how does plaquenil help you? I also have the rash in sun and its really irritating and i get unwanted attention from it too but my doctors don't seem to be able to give me anything to help is there anything you know that helps this?

    Thanks

    Caroline x

  • Hi Caroline,

    I take Levothyroxine, Plaquenil twice a day, Vit D and Aspirin. For many years told it was all Fibromyalgia and so by the time the Gp picked up Thyroid needed to start on 100mg. I was cold all the time, shaky hands and my periods very painful and heavy. Not sure if all linked to thyroid but that was what prompted him to test and have improved since. Plaquenil helps with my fatigue and aching I have noticed a slight improvement with dryness and my salivary glands find great relief. I began Plaquenil before Aspirin a very long story as struggled to obtain positive bloods ( Many thanks to Prof Hughes who sorted that for me and started me on Aspirin). Once Aspirin was added noticed much improvement with balance , dizzyness, migraine like headache, memory, leg pain,ear ache much much better, tinnitus much improved, eye sight not wobbly and stomach pain relief, now enjoying food. This mix of tablets has really helped so many of my symptoms.

    With regards to rash in sun I cover up, and also use Factor 50 sensitive cream a Swiss firm, very good as sinks in and is not greasy, can easily wear make up over it too. My cat is mostly white and wears in on his ears for protection and is approved by vets. Before treatment my weight was ten stone five despite eating like a bird and feeling sick all the time, now stable at eight stone twelve. I have learnt so much from support groups, books and the factsheets by Hughes foundation are excellent.

    Hope some of this helps a little.

  • Hi Louise,

    Thanks for replying. Which suncream is it? I could do with trying it. X

  • Hi Caroline,

    Its called Ultrasun 50 spf for face. I use on my chest also as rash bad there. Also free from perfume,emulsifiers and preservatives, which is good for me as have many allergies. It is not the cheapest but goes a long way. Dont be put off by thickness or white colour as rubs in really well and no grease. I called the company before buying as was getting fed up with buying products and not being happy, you could try that if you need further info.

    Good luck

  • That's great thanks x

  • Hi there and welcome, I have several things, alongside Hughes, and this is the right place to be fore advice and support. Glad to hear that you are getting to the bottom of it all. Mary F x

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